FORUM Gift truly from the heart arrives at holidays

A few weeks ago, I had occasion to see my internist for an annual physical.

Susan DuBrow

Published
12:00 am EST, Tuesday, December 16, 2003

Occasion really isnt the right word. It makes it sound festive, like Im going to a party. Oh, sure. My last annual physical was ages ago.

Of course, my doctor expressed concern that I hadnt come in sooner. I have a genetic neurological disability called Friedreichs ataxia that has undermined my gait, balance, coordination, visual acuity and so on, requiring regular checkups.

My disability can also cause devastating damage to the heart, like cardiomyopathy, which is deterioration of the heart muscle, and conduction defects, which are abnormal signals that lead to abnormal heart rates or fatal rhythms.

A very small percentage of patients who have Friedreichs ataxia never develop cardiac problems. Most do.

People think the heart beats because thats what its supposed to do.

Your heart beats because your brain tells it to. When there is nerve cell death in the brain, as there is in Friedreichs ataxia, nerve conduction is impaired. Neural messages, which are not communicated properly, short-circuit, causing conduction signals to go haywire. Thus the high risk of heart damage, which is the main cause of death in Friedreichs ataxia.

I reported to my internist that I was having very mild arrhythmia, nothing dramatic, just a little "thump, thump, thump, thump" instead of "thump, thump." She promptly sent me to the cardiologist, who stuck a Holter monitor on me to wear for 24 hours.

Holter monitoring is a continuous, 24 hour electrocardiographic recording of the hearts rhythm. Its a pretty simple device  a small recorder the size of a paperback is attached near your heart with electrodes that make a graphic record of the hearts electrical currents, both normal and abnormal.

This was my first time wearing the device. You are supposed to go about your daily business, but the minute the technician stuck the thing on me, I was plagued by irrational fear. What if I rode my stationary bike and my heart went into a dangerous rhythm? Or if I saw a mouse and my heart jumped out of my chest? Those sorts of things.

My grandfather, Myer, died of sudden cardiac arrest at the age of 53. I am 53. So you can understand, even beyond my disability, why I was alarmed.

What could I do to keep my mind off the monitor for those endless 24 hours? I decided to e-mail friends. Help, I said. Send me your reflections on the heart.

The e-mails flooded in.

"The power of the heart is enormous and transformative. Each of us has our own gifts that come from the flowering of our heart. Yours is always in bloom," said one.

Another touching one came from my friend, Yoshi, in Tokyo, who wrote that in Shintoism there are four fundamental terms for the heart. The first is "bright heart," which denotes the quality of a heart shining brightly as the sun. The second is "pure heart," which is a heart clear as a white jewel. The third is "correct heart," which is a heart inclined to justice, and the fourth, "straight heart," refers to a heart that is without misleading inclinations.

"Your heart," he wrote, "expresses all these forms."

So, you see from these tender offerings that there are many attributes of the heart that no electrocardiograph can measure.

I got through the 24 hours with the Holter monitor and dropped it off at the cardiologists the next day. Then I held my breath waiting for the result.

The news came the day after: My heart muscle and cardiac rhythm are within normal bounds. As the cardiologist put it, for someone with Friedreichs ataxia at such high risk of ruinous heart damage, I have, so far, beaten the odds. Death is not knocking on my door, not even close.

My relief and gratitude are inexpressible. To be graced by such a consoling gift at this holiday season was entirely unexpected.

Friday night is the first night of Hanukkah, also known as the Festival of Lights. When I light the first candle on my Hanukkah menorah, I will be lighting a flame against the darkness of all the sorrows and uncertainties in this world and illuminating the miracles possible for all our hearts.

May you be mindful of yours and happy holidays to one and all.

Susan DuBrow lives in Hamden. Readers may write her in care of the Register, 40 Sargent Drive, New Haven 06511.